Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Jan 2011.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
73 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
Who runs it and what they're paid
5 people listed on the 990; $65K paid to officers and key staff.
Eugene H Sobczak’s $60K as Executive Director is at the 42nd percentile of top reported officer pay among 329 $100K–1M medical research nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 2 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| Leah H Hirsch-Bobbitt | — | — | — | $64,800 | $65,350 |
| Eugene H Sobczak | $60,000 | $55,750 | $57,000 | $21,800 | — |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Improves lives of people with movement disorders through research, education, and care.
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Grant Funding
The Movement Disorders Foundation initiated its Grant Funding program in 2020 to the Knoebel Institute for Healthy Aging at the University of Denver. Funded projects must have a clear possibility of working at scale, but for which grant funding is otherwise difficult to obtain.
PD SELF (Parkinson's Self-Efficacy Learning Forum) is an innovative, interactive disease management curriculum based on psychosocial theory of self-efficacy. It helps people newly diagnosed with Parkinson's Disease and their care partners master the management of their chronic, progressive disease and retain that best quality of life.
HUNTINGTON'S DISEASE CLINIC is a comprehensive clinic where patients can be seen by a genetic counselor, psychologist, therapists, as well as providers, all with extensive experience helping families afflicted with Huntington's Disease (HD).
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Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2020 990, line by line.
Download 990
| Line | Start FY20 | End FY20 |
|---|---|---|
| Cash and savingsLn 1–2 | $167K | $141K |
| InvestmentsLn 11–13 | $523K | |
| Land, buildings, equipmentLn 10c | $0 | |
| Total assetsLn 16 | $167K | $664K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $167K | $664K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $170K | $170K | ||
| Grants to domestic individualsLn 2 | $0 | |||
| Grants and assistance to foreign recipientsLn 3 | $0 | |||
| Benefits paid to or for membersLn 4 | $0 | |||
| Pay of current officers, directors and key staffLn 5 | $65K | $65K | ||
| Pay of disqualified personsLn 6 | $0 | |||
| Other salaries and wagesLn 7 | $0 | |||
| Pension plan contributionsLn 8 | $0 | |||
| Other employee benefitsLn 9 | $0 | |||
| Payroll taxesLn 10 | $5K | $5K | ||
| Management feesLn 11a | $200 | $200 | ||
| Legal feesLn 11b | $2K | $2K | ||
| Accounting feesLn 11c | $465 | $465 | ||
| Lobbying feesLn 11d | $0 | |||
| Professional fundraising feesLn 11e | $2K | $2K | ||
| Investment management feesLn 11f | $0 | |||
| Other fees for servicesLn 11g | $95K | $89K | $6K | |
| Advertising and promotionLn 12 | $680 | $680 | ||
| Office expensesLn 13 | $14K | $5K | $9K | |
| Information technologyLn 14 | $0 | |||
| RoyaltiesLn 15 | $0 | |||
| OccupancyLn 16 | $0 | |||
| TravelLn 17 | $0 | |||
| Travel and entertainment for public officialsLn 18 | $0 | |||
| Conferences, conventions and meetingsLn 19 | $0 | |||
| InterestLn 20 | $0 | |||
| Payments to affiliatesLn 21 | $0 | |||
| Depreciation, depletion and amortizationLn 22 | $0 | |||
| InsuranceLn 23 | $3K | $3K | ||
| Other expenses (24a–d)Ln 24 | $2K | $2K | ||
| All other expensesLn 24e | $0 | |||
| Total functional expensesLn 25 | $360K | $265K | $94K | $2K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $256K | $278K | −$22K | $596K | 990 PDF |
| FY2024 | $164K | $209K | −$44K | $620K | 990 PDF |
| FY2023 | $148K | $108K | $39K | $664K | 990 PDF |
| FY2022 | $176K | $376K | −$200K | $691K | 990 PDF |
| FY2021 | $483K | $315K | $168K | $870K | 990 PDF |
| FY2020 Viewing | $824K | $360K | $463K | $664K | 990 PDF |
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Schedules filed Part IV
See the full FY2020 990 (4 parts)
Part VIII · Statement of revenue $823,620 across 9 lines filed
Part IX · Statement of functional expenses $360,394 across 31 lines filed
Part X · Balance sheet $663,784 assets, 16 lines filed
Part XI · Reconciliation of net assets $663,784 net assets at year end
Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File
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